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The RAW truth About lewy Bodys

Discussion in 'I have dementia' started by Norrms, Nov 21, 2015.

  1. Norrms

    Norrms Registered User

    Feb 19, 2009
    5,322
    Male
    Torquay Devon
    THE RAW TRUTH ABOUT LEWY BODY'S DEMENTIA

    This morning my left arm aches, it`s where Elaine had to hold me so tight and so hard last night as the hallucinations came thick and fast. They started out as Night terrors then quickly descended into hallucinations as i woke . The sheer ferocity of these is petrifying, the feeling as if i am being dragged down to the depths of hell is the only clear way i can explain it, and the sheer terror that runs through my body is so hard to explain.

    I screamed so loud and so long my throat hurts this morning, i reached a note i could never possibly do when just sitting here, the fear that fills me affects me so much i am somehow able to do this, and yet not possible at any other time. We must have gone back to sleep at some time, but goodness knows what time it was, but as i woke and looked at my Angel Elaine, the bags under her eyes, every line on her face was visible and the tiredness in her eyes is something i will never forget. Her exhaustion shows at every turn this morning, as she troops on, supposedly unaffected, i know different, i know better, i know her more than most and i KNOW she is absolutely shattered, and yet life goes on, and life will go, on regardless.

    This is the RAW TRUTH about living with lewy Body's type dementia, such a little known disease amongst many, including Dr`s and those in the medical field, and yet, affects so very many, more than you probably realise, some of us are convinced its the second most common form of dementia, and yet least diagnosed. I have no answer, but what i do know is i am, and will be forever grateful to my Angel Elaine, and others like her, all around the world, for being there, when we most need them to be

    Please share, oh, and good morning all xxxxxxxxxx
     
  2. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,938
    Female
    Dundee
    I'm sorry to hear things are so bad Norrms.
     
  3. Norrms

    Norrms Registered User

    Feb 19, 2009
    5,322
    Male
    Torquay Devon
    Thank you xxxx
     
  4. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,731
    oh Norrms this is so awful for both of you. I'm so sorry but thank you for going through all that pain again to share this with us. Will be thinking of you both today as you begin to recover again from your night of horror xxx
     
  5. Norrms

    Norrms Registered User

    Feb 19, 2009
    5,322
    Male
    Torquay Devon
    Thank you xxx
     
  6. john51

    john51 Registered User

    Apr 26, 2014
    289
    Male
    Dunstable, Bedfordshire
    Dear Norrms

    Thank you for writing this.
    I'm sorry that things are so terrible for you, but you really have helped me understand what is happening.

    A few weeks ago I was told that I couldn't take part in a study ofor drugs which might be effective with vascular dementia. The reason for this is that the screening for the study has shown that I have alzheimers with lewy bodies as well as vascular dementia.

    I really didnt understand what this meant, and have just been carrying on as normal.

    For a while now I have been having the most awful night mares. I neve rhad these as a child. The worst bit, as you describe, as the effects on out loved ones. In the morning I am unaware of these dreams. I have completely forgotten them. The tell tale signs are the look of total exhaustion on my wife's face, and she just continues to support me as if nothing has happened. Today she said you had a bad night last night..no mention of the effect this had on her.

    I really am sorry to hear how bad it is for you Norrms but thanks for helping me understand

    John
     
  7. Norrms

    Norrms Registered User

    Feb 19, 2009
    5,322
    Male
    Torquay Devon
    Thank you so m uch, so sorry to hear about your diagnosis
     
  8. Slugsta

    Slugsta Registered User

    Norrms, thank you so much for telling us how it is for you, it must have been awful in the first place never mind reliving it to describe it to us! Will you accept a hug from me? ((( Norrms)))

    John, I am sorry to hear of your diagnosis and the horrible nightmares :(

    I wish you both, and your lovely partners, a peaceful night.
     
  9. mrs mcgonnagal

    mrs mcgonnagal Registered User

    May 9, 2015
    153
    I really hope you have a better night tonight, your post is very important, thanks and best wishes
     
  10. Essie

    Essie Registered User

    Feb 11, 2015
    563
    Norrms, your bravery in making these posts is so valuable - it is so important to get the truth out there and you do that so well, but oh my heart goes out to you, and to Elaine too of course.

    My heartfelt sympathies Norrms, hugs and love xxxx
     
  11. Norrms

    Norrms Registered User

    Feb 19, 2009
    5,322
    Male
    Torquay Devon
    Thank you so much all and yes of course !! Thank you for the HUG xxxxxxxxxxxx
     
  12. black night

    black night Registered User

    Sep 26, 2014
    170
    I've vascular demeñtia can some one help

    I have vascular demeñtia and depression and anxiety attacks and muscular problems and imbalance and tinatis my left hand is now useless I can't stay on my feel cause I fall over I've now after 2years been put back on memory team I've had to wait 3months o see a roomatoligist about my romatoyed arthritis
     

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